Tuesday, July 30, 2013

written by Bec Oakley

I don’t
know why it’s taken me so long to consider a weighted blanket for my
kids.

Maybe because they’ve always been good at settling in at night...
until we moved house last year and Attie had a room of his own for the first
time. He doesn’t like this one little bit, and it’s been a nightly struggle to
get him to conquer his fear of being alone. Finding the right kind of night
light, leaving a fan on for white noise, letting the dog sleep in his room.
Letting the dog sleep on his bed. Letting the dog sleep on the floor when they
argued over who got the pillow.

One night after the
tenth round of “but your bedroom is so far awayyyyyy” (dude, it’s three feet), I
squeezed him extra hard and said “Here, I’ll give you enough hug to last until
morning.” Underneath the weight of my body I heard a muffled “Mummy? That
squashing feels really good. Do that some more.”

D’oh.

I headed
back to bed to research how to make a DIY weighted blanket. They’re expensive to
buy, and what if he didn’t like the feeling? Spare cash isn’t exactly abundant
at the moment, so I figured making my own would be a great low-risk solution...
completely ignoring the fact that I have no skills of any kind. But hey, I’m a
crafting optimist.

A couple of hours later I became despondent at all the
tutorials touting “It’s sew easy!” (see what they did there), and talk of exotic
things like seams and stitching and cotton batting. I’ll let you in on a secret.
I DON’T KNOW HOW TO SEW. Oddly, this has in no way dampened my enthusiasm for
collecting vintage sewing patterns, of which I have over 500 for no reason other
than they’re completely and utterly awesome and I am in intense fascination with
every single one of them.

See? How could this not
make you insanely happy.
The collar! The sling-backs! The Farrah
Flip!

Tuesday, July 23, 2013

by Bec Oakley

originally posted on snagglebox.com

One area that I’m focusing on with Max at the
moment is helping him to figure out when he needs to get help.

Like a lot
of autistic kids, he finds it difficult to know when or how to go about getting
it - shoe laces that come untied, a homework question that he’s stuck on, even
some pretty serious injuries are all suffered in silence until they happen to
come to my attention.

Being able
to get help when you need it is an essential skill for independence, not to
mention safety and survival, but it’s a much more complex skill than most people
realize. There's also the dangerous assumption that kids who don't ask for help
don't need it. I’ve seen so many IEP goals that say something like “Ben will ask
for help when needed”, but it’s not a simple behaviour or just something they
need to try harder at.

So let’s look at the steps that make up 'seeking
assistance' to try and understand why it can be difficult for some people (oh
and by the way, it’s not just kids that can struggle with this - I find it
almost impossible to do too).

Knowing that you have a
problem

This isn’t always as easy as it sounds. Some situations might
be a problem for other people but not for you, or might become a problem at some
point but haven’t yet. Untied shoelaces only become a problem when you try to
walk and your shoe falls off. Or when the teacher notices them and tells you to
fix it. But until that happens untied shoelaces are just untied shoelaces. No
solution required.

Some problems make themselves known instantly - an
angry dog that’s running towards you, forgetting where you’ve parked your car.
But many problems sneak up on you - like teeth that slowly decay from incorrect
brushing or the emotional distance between spouses who aren’t communicating
well. So it might not always be clear when a situation has turned into a
problem... and you can’t get help if you don’t know that you need
it.

Knowing that you need help

Got a problem, get
help... simple, right? Well no, because having a problem is not the same thing
as needing help. I’ll say it again because this is important - having a
problem is not the same thing as needing help.

If you have a problem
but already know the solution and have everything you need to solve it, you
don’t need assistance. You actually only need help when you don't know how to
fix it, can't do it alone or you've tried and your solution didn't
work.

And yet “do you have a problem” is about as far as we usually go in
teaching kids how to figure out when to get help. It’s also why it can be so
hard for some people to understand that others might struggle with this. There’s
also a big difference between wanting help and needing help, but
that’s a distinction that can be difficult for some kids to
make.

Autistic kids might not want help if they’re perfectionists, or if
they’ve had a bad experience seeking help in the past. Maybe they asked the
wrong person at the wrong time in the wrong way, and somebody yelled at them.
Maybe they got scolded for seeking help for problems that “shouldn’t be
problems”. Or maybe the help was given to them in a way that they didn’t
understand or which made the problem a whole lot worse.

Thursday, July 18, 2013

This is the self-image that I’ve had for most of my
life, since I first heard those words in third grade. An angry person. The Hulk,
capable of explosion at any moment. It wasn’t until I was well into my thirties
that I came to understand that it was completely wrong. That my stress-induced
outbursts or language shutdowns weren’t aggression at all, but the involuntary
response to overload known as a meltdown.

Meltdowns
happen in situations where it's hard to cope and there's no way to escape or
relieve the tension. The body is overwhelmed by cognitive, sensory or emotional
demands that exceed the capacity to process them, and triggers a panic-like
reaction in which the brain starts to shut down. Language and executive
functions like memory, decision making and problem solving become compromised,
making it difficult to find a way out of the situation.

Sensory overload,
confusion, frustration and pain are all things that can trigger this kind of
physiological reaction. If the balance between demands and coping isn’t
restored, the meltdown progresses toward an external outburst or internal
shutdown.

These episodes of intense stress, panic and explosion can be
really traumatic and painful to go through, but it’s not just experiencing the
meltdowns which can have serious long-term impacts on mental and physical
well-being.

It’s what you’re taught about them.

THE
COST OF NOT KNOWING

For most of my life I didn’t understand the way
my own body worked.

I didn’t know that I was more sensitive to sound than
other people, or that others found eye contact to be a comfortable and rewarding
thing to do. I assumed we were all operating with the same kind of hardware, so
the fact that I couldn’t tolerate things that others seemed to be able to must
surely have been a character flaw on my part. I’d learned to interpret my own
behaviour in the only context that was given to me...

If you yell, you’re
angry.
If you avoid eye contact, you’re rude.
If you sit in the corner at
a party, you’re impolite.
If you don’t answer your teacher, you’re
naughty.
If you don’t want to join in, you’re
stubborn/selfish/lazy/boring.

Not wanting to be thought of as any of
these things, I constantly put myself in situations which were overwhelming for
me - and kept myself there long past the point of overload. Meltdowns were
inevitable.

Without knowledge of my own limits, I wasn't able to
recognize when I was reaching overload or find the exit strategies that would’ve
prevented the meltdowns. I wasn’t able to plan ways to cope or reduce their
intensity. Without an explanation for my reactions or the words to explain them
to others, I accepted the only reasons given to me - that I was angry,
intolerant, rude or stubborn.

This fallout - the confusion, helplessness
and negative self-image - is a big part of the long-term cost of
meltdowns.

And it’s one that’s completely
preventable.

TEACHING KIDS ABOUT MELTDOWNS

Kids
who are prone to meltdowns are well aware that they happen, and what those
around them think about that. What they're less likely to understand is exactly
what's happening, and why. And in the absence of that information they will form
their own explanations.

Tuesday, July 16, 2013

by Bec Oakley

The world can be a pretty
overwhelming place for kids with hypersensitive sensory systems. Lights, sound,
colours, smells, the touch of clothes against their skin, the flickering of the
TV screen... it all gets in and can be hard to shut off.

When things get
to be too much they need an escape from all the stimulation. That's not always
easy to manage though, especially when bedrooms are shared with siblings or
you're visiting at someone else's house.

So here's a quick solution using
something everyone has lying around at home!

Grab a fitted sheet (single bed size is best)

Pop it over the top of the sofa - the elastic ends of the sheet go over the
arms

Pull the sides down across the back and front (the entire sofa should be
covered)

Hey presto, an instant sensory haven!

Hold the front side of the sheet open like a door so your kids can crawl
inside

The best part about this is you can carry a fitted sheet
with you just about anywhere. It won't block out much noise, but definitely
helps calm visual overload and gives kids somewhere they can go amidst the chaos
to chill and reset. And besides, who doesn't love a fort?

To make it
extra comfy, tuck a snuggly blanket into the sofa cushions first. My kids both
love it and can spend hours in there - reading or playing on the
iPad.

Hmm, I wonder if it works for grown-ups...

If you would like more information about Sensory Processing Disorder, please contact Family Matters at 866-436-7842.

Thursday, July 11, 2013

My oldest son has high functioning autism; one of his biggest areas of difficulty is social skills. Danny struggles to respond appropriately in social situations, even though he really likes other kids. He often gets frustrated and feels like he as no friends.

If you have a child with autism or other learning disabilities, chances are, they struggle with social skills, too. Every learning disorder has a social component, which makes it much more difficult for kids with LD.

Lavoie says that nowadays kids are in a friendship crisis; they have fewer opportunities to negotiate friendships than in the past when kids were able to roam the neighborhoods more freely.

For kids with special needs, it is even harder because language and learning disabilities are a cause AND a consequence of social isolation. These kids often have difficulty with reading social cues, social memory, reading and understanding body language, among other things, which makes it difficult to fit in.

Lavoie asserts that we are confronted with hundreds of social contracts each day. People with appropriate social skills understand that they shouldn't hug a stranger or stand too close to people when talking. They intuitively know what tone of voice to use in each situation and who they can joke with. Individuals who have difficulty with the many social contracts they encounter also have difficulty making and keeping friends.

This is a big problem, because, as Lavoie points out: children with social skills problems become adults with social skills problems.

It's So Much Work to Be Your Friend is available in book or video form and is filled with practical advice for parents and teachers of kids with special needs. For example, Lavoie suggests that parents "share war stories" with their kids so that they feel less alone. Also, he recommends talking with kids before bedtime when they are relaxed and more likely to talk. Encouraging hobbies and collections is a great way to foster what Lavoie terms "islands of competency" and gives kids something to bond over.

He provides 5 questions for kids to determine whether someone is their friend and he gives invaluable advice about setting up play dates.

As a mom of a special needs kid, I found this video and book immensely helpful. Here at Family Matters we have copies of both the DVD and the book in our lending library. If you live in Illinois, you can borrow a copy for a month. We provide a self-addressed, stamped envelope to make returning easy!

If you would like to borrow a copy of this DVD, please contact Family Matters at 866-436-7842. Or you can visit our website at http://www.fmptic.org/library to order a copy yourself.

Tuesday, July 9, 2013

by Bec Oakley

originally posted on snagglebox.com

Clumsyadj. Done awkwardly or
without skill.

It was shaping up to be one of those
mornings. I crawled out of bed after only a few hours sleep and drowsily made
the boys some hot cocoa. In my sedated state I made the first big mistake of the
morning - I put the mug on the computer desk.

A few
seconds later, in his excitement to show me something, Attie reached towards the
computer screen and knocked the mug over. Hot sticky cocoa spilled all over the
desk, keyboard, mouse and expensive-looking ‘History of Pixar’ coffee table book
that we’d borrowed from the library the day before. Cocoa dripped onto the
floor. It seeped into cupboards. The dog hovered nearby waiting for me to drop
my guard.

And then I made the second big mistake. I swore.
Loudly.

It’s not the words that mattered (my kids have heard them plenty
of times before), it was the tone. The obvious disgust, disappointment and
disapproval that in my tired state I wasn’t careful enough to channel towards
the cocoa instead of Attie himself.

I grew up being the one who knocked
things over, who dropped the ball and walked into furniture and tripped over
nothing. I’m still that person. My constantly moving hands are always
accidentally upending vases and smacking people in the face. So I know exactly
what Attie was feeling when he ran to his room and hid under a
blanket.

Tuesday, July 2, 2013

We're on drugs. Yep, you name it (duh, legally prescribed drugs), we've probably tried it. I can't say I'm as drug-savvy as Nancy Botwin, and we certainly don't grow or sell them, but we do manage them. Doses, prescriptions, times, counter-effects, interactions, half-lives - it's a lot to take in when you're just trying to keep a kid from scratching your eyes out.

This post is NOT about the pros and cons of medicating children. It's a highly personal, emotional issue for many of us, and I don't wish to debate that here. Obviously, medications are not always the answer. Medications alone rarely are the answer. And unfortunately identifying the RIGHT medications and dosages often can feel like chasing a carrot: just when you think you've nailed it -bam! - the kid has a growth spurt; or completely new symptoms; or they stop making THAT pill in THAT dose; or something else.

Nonetheless, I chose to add medications to our treatment plans, and any reservations I had quickly dissipated after witnessing undeniable, SIGNIFICANT results.

Of course, that doesn't mean I love doling out psychotropic medications any more than I like my kid's melatonin habit. However, I defer to the age-old wisdom: if your child needs a wheelchair, you provide the wheelchair. Yes, you also offer therapy, rehab, counseling, sporn flushing, and so on, but you must provide the wheelchair.

Anyhoo, I've become somewhat of a preachy busybody on this topic because I screw up a lot, and it makes me feel much better to pretend I've learned something from it. So, as much as I support the use of psychiatric medications when needed, I am militant about the following pointers. If you have others, please share them below, because I'm pretty sure we will continue to be a poster household for Big Pharma for many years to come.

ONE PHARMACY: Try to stick with one pharmacy for all of the obvious reasons (automatic refills; location; medication interaction flags), but also because they will get to know you. And this is critical when it is Labor Day weekend and the pharmacy is about to close and you are out of refills on your rx and your doctor is on vacation in Aruba. If they know you as well as ours knows us, they just MIGHT be willing to advance you enough pills to take you through Tuesday. (I'm just guessing here.)

ONE SPECIALIST: There are many wonderful doctors out there, and many are capable of writing perfectly legal prescriptions. Maybe your neurologist prescribes anti-seizure meds; and your developmental ped recommends an SSRI; and then your pediatrician scribbles out an ADHD scrip...you can see that this is going to get ugly. Select one doctor to prescribe (or at least manage) your medication cocktail. And, at some point, you will want to consider whether that person should be a psychiatrist, preferably one who is educated, experienced and reputable when it comes to pharmaceuticals - but not in bed with big pharma. It's okay to ask that dev ped or that neurologist who they recommend and discuss adding a specialist to the team. I've had people tell me they are afraid of offending their doctor. I'm sorry: GET OVER IT. Focus on what's best for you and the kid!

CHOOSE WISELY: Perhaps your pediatrician is your drug dealer of choice. (Again, as long as they source or know they are the ones "managing" the meds, fine.) Whomever you choose, choose wisely. Think about these questions:

Is this their specialty?

Do they stay current with the latest research on medications - including off-label uses - and do they have an academic and practical understanding of interactions, dosing and side effects.

Are they easily accessible for questions, concerns, issues, and even last-minute, emergency refills - the bane of everyone's existence? Our psychiatrist actually emails us responses to questions and feedback on minor medication changes. I love him!